Monday, 27 June 2011

The Irony

It’s been an eventful few weeks in the world of me. I successfully moved house, thanks to the help of my super boyfriend and family, my business is starting to build up nicely and I am very happy in my new home. It’s amazing how much more independent I feel living away from home again. Don’t get me wrong I loved being at home with mum but there comes a time when everyone just needs their own space and the ability to feel a bit more ‘grown up’. I certainly do feel like a grown up, I forgot how thrilling washing, hovering and food shopping is...

But seriously, with the support of my boyfriend we have become a tight little unit in just a short space of time. We work well together, he understands my need for support with things like shopping and gives me a break by doing his fair share of household chores. He even cooks which I know is a bonus! (not that I mind cooking but having someone cook for you or with you is kinda special don’t you think?) The new house works well with my condition too, having an en suite means it’s not too far to the bathroom when morning arrives and I struggle to get out of bed.It’s amazing that I didn’t even think of that being an issue but it really helps! The house is easy maintenance cleaning wise, meaning less effort required from moi! And the sofa is super comfy (for those ‘can’t quite get off the couch’ days).

So with all this loveliness, sods law saw an opportunity and struck me down in my prime. I have mentioned on the facebook page about my ridiculous ‘granny hip’ giving me grief the past couple of weeks. It started with a bit of an ache and has quickly progressed into a full on, excruciating nightmare. I haven’t slept properly in days, I feel nauseas, dizzy, unable to walk and pretty much at a loss of what to do.I can honestly say this is the worst pain I have felt since diagnosis. Being convinced it was due to my RA, I got on the phone to my specialist and she squeezed me in for an appointment today (for which I am incredibly grateful).

To my surprise, the pain I am experiencing may not be my RA flaring after all. Nope, something entirely different and a potential new one to add to the list. Turns out long term or overuse of steroids can cause something called Osteonecrosis. Yeh, I was stumped too. I know the dangers of using steroids long term and have been warned blah blah but the reality is I was in so much pain when they were prescribed that I would have tried anything to get better, and the steroids actually seemed to help. I hoped I wouldn’t be on them forever and was reassured that as my condition came under control I could gradually come off the darn things.

All has been going well with the decreasing of the dose, no added pain as such (touch wood this continues) until the damn hip started giving me jip. It’s a complicated condition (look it up) but Osteonecrosis is a disease of the bones which can cause death of the bone. Blood flow and tissue are affected around the hip joint causing the pain and if left untreated the bone can collapse. Bloody brilliant. I should have expected that the pain I had been feeling was slightly different to the usual RA flare. It’s not for certain that I have the necrosis-thingy yet; I am having tests urgently to determine if this is the case, however I am slightly concerned that treatment for the condition is none other than surgery. Now you can probably imagine that hip surgery and running your own business don’t mix well but I am terrified that I will have to be treated in this way if what the specialist suspects is correct.

So how ironic then that the very treatments that have made my RA improve drastically over the past year have ultimately messed up another part of my body that now may need fixing! I can’t comprehend the hilarious time my body is having right now trying to sort stuff out. My brain probably doesn’t know where to start. All I can hope is for the relief of this pain because it is literally driving me insane. I need sleep to function and I am starting to lose the plot for lack of it.

So, as we throw a new one into the mix, stay tuned for the results of Necrosis Factor 2011... In the mean time ill be hobbling around with a wooden stick. Yes, you read it right, a wooden stick. I am so bloody cool.

3 comments:

Oh wow! What a post. First, congrats on getting back out on your own! Be proud! Be very proud! Sorry for this hip mess. I take steriods and have been for years but I did know about this little possible nasty side effect. Seems we are damned if we do and damned if we don't. Please keep us up to speed on what the doc finds out about your hip. Keeping positive thoughts out there that the hip will be an easy fix for you...

oh my! i've been experiecing an awful pain in my hip for the past month or so. can barely walk somedays. reading this was reading about my struggles! I've been talking these stupid steriods since 2007. seems like everytime I try to step down i get terrible flare ups. now i'm concerned that my hip pain might not be RA like i chalked it up to be! please keep us posted as to how the testing goes! sending prayers and hugs ur way. Rebecca

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)